If you or a member of your family are considering genetic testing, you could benefit from meeting with a genetic counselor to discuss the genetics of ALS, as well as the process and ramifications of getting tested.
The process of genetic testing and the results of your test can be too complicated for any one person to digest, and a genetic counselor can help you make sense of all of it. They work with health care providers, caregivers, and people with ALS to arrange genetic testing, interpret the results, and plan out next steps. They are experts in how genetics affects peoples’ lives on several levels.
For example, they:
- Talk you through the process, potential benefits, costs, and risks of getting a genetic test.
- Interpret the results of your genetic test and help you understand what a specific genetic variant means for your and your family’s health.
- Assist with family planning.
- Help you work through the psychological, emotional, and social ramifications of living with your genetic test results.
Meeting with a Genetic Counselor
When you meet with a genetic counselor for the first time, they will take a detailed medical and family history and discuss the impact of genetic testing with you. They will likely ask you to bring your medical records and a list of family members. They will also ask you if have any family members with ALS or frontotemporal dementia (FTD), which can be associated with ALS.
They will help work through the pros and cons of genetic testing, taking your concerns and values into account, and help you decide whether or not to get tested.
If you choose to get a genetic test, your genetic counselor will explain and have you sign a consent form, along with helping you find out if genetic testing is covered by your insurance. They will also review and help interpret your genetic test results. Finally, your counselor will help you plan next steps, such as additional screening or entry into a clinical trial.
Your genetic counselor will become a reliable resource for you and your family as you live with ALS. Your counselor should be available at any time to answer your questions about how your genetics affect you and your family.
Questions to Ask a Genetic Counselor
When you embark on your journey of understanding your ALS with a genetic counselor, you will likely have a lot of questions. Here a few example questions that could help the conversation get started:
- What will happen at my first visit with my genetic counselor?
- What are the medical, financial, and psychological risks of getting a genetic test?
- What is the testing process like?
- How will genetic testing affect my insurance coverage?
- How accurate is genetic testing?
- What will the results of my genetic test tell me?
- What can I do with the information I get?
- How will the results of my test impact my medical care?
- Are there any support resources available to me?
For more information about genetic counseling or how to find a counselor in your area, please visit the National Society of Genetic Counselors at www.nsgc.org.
What Does Genetic Counseling Cost?
Genetic counseling is typically covered by health insurance. For people who do not have health insurance, counseling sessions typically cost $150 per hour or more. For patients who have health insurance, the visit would equate to a doctor visit or a specialist copay of approximately $15 to $35.
Receive Free Genetic Counseling
The ALS Association believes that upon diagnosis, people living with ALS/MND and their families must have the right to access genetic counseling and testing, current education about clinical genetics in ALS/MND, and safeguards against genetic discrimination.
Thanks to a sponsorship from Biogen, the diagnostic company Invitae is offering genetic testing and post-test counseling to people with ALS and their families at no charge. For more information about genetic counseling or how to find a counselor in your area, please visit the National Society of Genetic Counselors at www.nsgc.org. But before you schedule your first appointment, talk to your doctor to get answers to your initial questions and to get started.
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